July 2019 Update

Yoga Study

Paying close attention to instructions

Favorite eats after Milwaukee trips

Coloring it purple for pancreas disease awareness month--JULY

Jaylen had a follow up appointment at the end of May with Children's Hospital of WI. Dr. Goday had mentioned that he thought Jaylen has become chronic because of the episodes being so close together and less intense now. This is a normal path for chronic pancreatitis.  I didn't really want to face that his acute recurrent has now become chronic, but I guess we don't have a choice in the matter. Doc ordered a follow up elastase test, MRCP (MRI with contrast), and wanted him to start relaxation techniques to try to help manage pain. Jay also got to participate in a yoga study. This study, from what I gathered, was going to measure the level of inflammation before and after yoga poses. It will be interesting to see results, but I'm sure the study will have many participants and take a lot of time. His doctor and I discussed starting him on the drug gabapentin, a nerve blocker, to try to keep his small flares from keeping him out of school. We had reviewed amitriptyline, but Jay's heart showed borderline QT, preventing him from starting that one. The script was filled and Jay started the meds after school let out the beginning of June. Anything to help at this point would be lovely.

Fast forward to July 2nd- MRCP and relaxation techniques. He did awesome in the MRCP machine, laying still so they didn't have to do anything twice.  He also learned so much from the psychology/pain management department on how to relax his body during an episode. We came home with a lot of information.

Results came back for elastase test-- the test showed 342 ug so his pancreas is still at a normal range when it isn't in a flare. This just means that aside from malfunctioning with pancreatitis, it still does its job outside of an episode.

MRCP shows more narrowing of some parts of the pancreatic duct, which is consistent with chronic pancreatitis.

Vitamin levels are good, liver, gallbladder, spleen, adrenal glands, kidneys, ureters, bowel, lymph nodes, abdominal wall, and bone imaging appear all normal.

Jay continues to have small episodes about every other week where we control pain from home. We use the tools given to us along with tylenol and ibuprofen. Couple weekends in July have brought more severe episodes, but he always perseveres! Warrior child! Still praying for healing and strength for our JJ.

Pancreatitis sucks...